Thursday, October 25, 2007

My Skeleton

My brother, sister, and I were sent to a school thirty minutes from home. We had daily auditory lessons. The oralist mentality was strong in the 1960s. The audiologist told my parents NOT to learn sign language. “Make them talk.” If we learned signs, it would make us “lazy” and not talk. My brother and sister were mainstreamed into the local school in the first and second grades. I remained in the self-contained classroom with other deaf kids. (Most of these kids were deafened because their mothers had German measles. The vaccine came out in the late 1960s.)

I had the advantage of signing at school. (We were encouraged to both talk and sign.) But when I was at home, it was a total oral environment. I was, and still am. culturally hearing.

Some of the deaf kids singled me out because I had some hearing. I wasn’t “d/Deaf” enough. (I wasn't immersed in the Deaf culture and I also had some hearing.) I wasn’t mainstreamed until I was in 8th grade. What a wake-up call!! I had to study to keep up with my peers. I was on my own. No interpreters. No teachers who knew sign language. It was a total oral environment. I struggled with my identity. I wasn’t d/Deaf enough, but I wasn’t “hearing” enough, either. Where did I fit in?

My self-esteem wasn’t very strong. I felt like I was constantly being criticized. I was different. I was sooo focused on that. I felt like everyone knew I was “different”.

After graduating high school, I had a hard time finding work. Who would hire a hard-of-hearing (HOH) person with no experience? I was honest and told potential employers that I was HOH. I didn’t have to hide my disability. I was coming to terms with it.

I remember when I was working at a factory, a new hire was assigned to work with me. He was told by other well-meaning co-workers that I was HOH and that he needed to face me as he talked to me. We found out that we lived in the same town (the factory is a 35-40 minute commute). We talked about where we went to school. We found out that we attended the same high school. He was a grade behind me. He exclaimed, “I knew you looked familiar. I didn’t know you had a hearing problem.” That made me realize how focused I was on my hearing loss. That I felt like everyone knew I was HOH. I was a very insecure person in high school. I wasn’t “popular” and I just felt like I didn’t fit in. I gave my parents a hard time because I wanted to go back to the other school with my old school friends. I resented being mainstreamed like that.

Just when I was already coming to terms with my hearing loss, I had another disability to deal with-vision loss. I was already in my late 20s, noticing that I didn’t see so well in the dark anymore. My peripheral vision was diminishing. I had a lot of gaps in my peripheral vision that made it so hard to get used to the fact that it was going. Imagine horse’s blinders next to your eyes, but poke some holes in it. You can still still see something and sense some movement out of the corners of your eyes. They call it "islands of vision" or holes in your vision.

I have yet to come to terms with my vision loss. I feel a myriad of emotions-anger, frustration, acceptance, depression….I am continuously going up and down. I can never get through one step of the grieving process to the next. Every time I notice that my vision is getting worse, I start the grieving process all over again. I am pretty much not denying my condition anymore. It’s deteriorated to the point that I know it’s there. I can’t ignore it anymore or pretend that it’s not there. I don’t want pity. I want compassion. I want understanding.

I should prepare myself by learning Braille, getting mobility training (white cane), learn tactile sign language, computer-enchanced technology, and independent living (cooking, housework, grocery shopping, labeling food, laundry). Support from family is soooo important. I feel like they expect me to make it easy for them, not the other way around.

Some people with Usher Syndrome spend months (six months, nine months, a year-depends on how much you need to learn to be independent) at Helen Keller National Center. This is a great opportunity for people who are deafblind-even if they have a little hearing and sight left. For me, I can't even think about leaving my family for six months to prepare myself for independent living. Some do. They know they are doing it so that they don't end up relying on their family-they can be independent. This is something I have to think about. There is a center in Milwaukee that does some of these things, but I still would have to leave my family for a certain amount of time and that sucks. I don't know what I am going to do. This is where "support from family" comes in. Do I have it?

I cannot comprehend leaving my family for a long time. The best I can do is work out a plan of some sort. Maybe one week of O & M training here. Doing other things at my own pace.

I need to change my mentality. Coming out of the proverbial closet is not easy. I don’t care if people know I am HOH. I lived with it my whole life. I like to wear my hair up in a pony tail to expose my hearing aids. That way people see it. Some already can tell just by the way I act and talk.

If I had vision loss all my life, maybe it’d be easier. Kids are so resilient that way. You don’t know what you are missing if you never had it or much of it or if you just grew up with it.

I do need to face it; I am not getting any better. I need to prepare myself. I can choose to wait and hope that a cure will be found, or prepare myself anyway to make life easier for me.

(Easier said than done.)

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At Thu Oct 25, 04:02:00 PM , Blogger Darlene said...

reading this was heartbreaking...but I admire your bravery and determination, your intuition to prepare rather than deny...

sending you healthy thoughts and a candle and whispering prayers,

xOx darlene

At Thu Oct 25, 06:42:00 PM , Blogger lime said...

thanks for being so honest about the swirl of emotions you've had to deal with. it seems to me the cycle of grieving process you are experiencing with the loss of vision would be a very normal thing.

i understand it is not your first choice to leave your family for the center in milwaukee but i also can' help but wonder if it wouldn't help you find some of the emotional support you might need to process those feelings....not just prepare you in a practical sense (braille, tactile SL) for what lies ahead. do they offer any kind of progrmas for families as well, to help them understnad what you are going through? just some thoughts.

At Thu Oct 25, 07:16:00 PM , Blogger Beth said...

I can't even begin to imagination what you have gone through and are going through. All I can say is that you are a person's whose spirit and courage are an inspiration to others.
Hugs and love.

At Thu Oct 25, 10:09:00 PM , Blogger Breazy said...

My prayers are with you. I wish you the best of luck with whatever you choose.

Thank you so much for your encouraging words regarding my upcoming surgery. I would be a liar if I said I wasn't a bit scared because I am but only about the pain afterwards.

Have a good weekend!


At Fri Oct 26, 07:49:00 AM , Blogger Amrita said...

This stirred up such a lot of emotion in me i feel like crying.Shari i am reaching out to hug you.
I know what you feel specially the school experiences, only i had a vision problem, myopia, extremely sensitive to the sun and bright lights and color blind. I had no self esteem. I was sort of marginalized at home too and emotionally abused.
I trained to be a teacher, after doing my Masters. Lost 2 very good jobs because of my disabilities.
My hearing loss began in my mid
I identify with you Shari. And i will pray that you may not lose your sight.
Somehow you give me courage to go on.I never had the courage to seek a life partner, but now I am gaining confidence to slowly venture into that.
God bless you.

At Fri Oct 26, 08:13:00 AM , Blogger Shari said...

Thank you all. I know that the best I can do is probably leave my family for a week to train for the cane marathon (crash course on mobility and orientation). I could take Braille classes at my own pace and do it online and/or via corresponce. Baby steps...right now I just want to concentrate on finishing the rest of my classes. Some have said that even if they did these things before things got really bad, re-learning was a snap. I'll let you know what I do.

At Fri Oct 26, 12:15:00 PM , Blogger G said...

Whatever you decide, good thoughts and prayers to guide you, Shari. This post has so moved me. Lime brings up some good points. You do need support in all ways to help both you and your family deal with all of your feelings and fears. I hope you get every support that you need and deserve.

Best to you ~ G

At Sun Oct 28, 05:04:00 PM , Blogger Michelle O'Neil said...

I was really touched by what you wrote, (people want you to make it easier for them, rather than the other way around).

Tough choices you have to make.

I hadn't realized your siblings had Usher Syndrome too.

Love & prayers to you Shari as you figure out what to do, and you will.

At Tue Oct 30, 07:58:00 AM , Blogger Laura said...

You amaze me. You really do. The decision you make will be the right one for you, and know that it is often that I think of you.

At Fri Nov 02, 11:57:00 AM , Anonymous Anonymous said...

I think it would be so neat (and also helpful) if you did a post something like, "Pity is..., Compassion is..."--like with examples of each.

At Sat Nov 03, 10:35:00 AM , Blogger Shari said...

Thanks everyone, there's always a decision that needs to be made that's soooo hard.

Swistle-I guess all I can say is that pity is feeling sorry for someone (Oh, I couldn't deal with what you are living with) and compassion is empathy and encouragement (look at the things you can do, if you put your mind to it nothing's impossible, I can try to understand what it's like,...or always looking out for me without making me feel "stupid"). Does that clarify things? I don't want to be made to feel like I can't do anything for myself.


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